Lately, I’ve found myself in the strange position of being a bit of an “eminence gris” among those of us who have agreed to participate in the DigniCap “cold cap” trial that succeeded in preserving my hair through chemo. I believe that I am study subject number 4. There are at least a dozen behind me in the pipeline. (All together, 25 will participate in this “feasibility study.” If this goes well, another hundred will try the Dignicap in a larger, follow-up study.) Several of my fellow study subjects contact me recently.
They are full of questions: “Does the cap hurt?” [Yes, but Vicodin dulls many things.]
“Will it really save my hair?” [Yes.]
“Is it really necessary to hold down hair washing to an absolute minimum?” [Yes.}
"What about blow-drying?" [Don't do it. If you must look halfway decent for some event, try blowing with cool air and don't use a brush.]
“Can I get hair cuts?” [Verboten till one month after your last chemo infusion.]
And then, I start to get frantic emails. “You said you had some hair loss? How much? A lot of hair seems to be coming out…I think I’m going to start looking at wigs … Maybe I can salvage a pixie cut from this. … I look like a cancer patient now. …”
I talk to a couple of these cold cap compatriots. They had been so hopeful about DigniCap and the prospect of keeping their hair. Now they are so, so sad to be losing it. I have a bit of survivor’s guilt. What have I done to deserve the luxury of running my hands through my hair? Why am I so lucky that I can avoid acquiring a cap and scarf collection? There seems to be nothing I can say to make it better for them.
I run into Alexa, the young woman who’s the clinical coordinator for the cold cap study at UCSF. (There’s another group at Wake Forest University.) She tells me that, apparently, the coolant was leaking from the UCSF DigniCap machine. Dr. Rugo, my oncologist and one of the study’s lead researchers, insists that a new machine be sent from Sweden. It has just been installed in the infusion center. It should work fine from now on, Alexa says. Alas, that will not bring back the hair of the women who used the malfunctioning machine.
At just this time, I get an email from my dear friend Alison who lives in Singapore. We lived in Beijing together back in the day, and now she’s an author and communications consultant. She’s also a keen observer of the human condition. She says it’s OK to use her email, so I quote it here at length:
“I’ve been thinking of you a lot, and especially so since I went for an overdue mammogram and ultrasound the other day. Between those and seeing the breast specialist for his analysis, I sat in his waiting room and pretended to read while I watched the people. There were two young Chinese men in the room, one big, one much smaller. They were what we tend to call “Ah Beng” here. It’s sort of like a red neck, but in a city. Although they sometimes like to dress up a little. The big one had some power. He had slipped one foot out of his slipper and was sort of lounging. The smaller one was standing, looking nervous. Three women trooped out of the doctor’s office – two young, one older. One of the younger ones sat down next to the big fellow, and started explaining things. The other young woman crouched at the first woman’s knee, and the older woman seemed to disappear. She wasn’t the focus. Although the two young men had been speaking a dialect, they all now started speaking Mandarin, but too low for me to understand. I was astonished, as it seemed to me the young woman must have been talking about her own condition, and she looked so worried.
“Eventually they moved over to the desk, and started asking questions and discussing payment. I noticed that the older woman was walking up and down in the hall. At one point she came back in and listened a little, and this was when I noticed a bulky lump under her shirt. She went back out into the hall. Now I figured out that she was the mother of these four. She was the one in trouble, and they were trying to understand how to manage it. As they talked with the doctor’s assistants about treatments and plastic surgery and how many credit cards they could use to pay, I started to cry. They were trying so hard. And not once – not once – did a word pass between them and their mother, or between their mother and the assistants.
“When I went in to see the doctor, he was rubbing his face and shaking his head. “It’s an awful story,” he told me.
“The family was from Malaysia. The woman had been for surgery to remove an advanced cancerous lump, but hadn’t done any chemo or radiation. Many Asian women, he told me, are happy enough to go under the knife, but they avoid chemo, mostly, he said, because they don’t want to lose their hair. Not only had she not done the chemo, but also the surgery had not been done well. The margins weren’t big enough all around, and the cancer had spread. He wishes there were support groups here as there are in the US – and the visibility of cancer survivors.
“Communication with doctors, and communication in families, is still a big problem here, Heath. I felt so conflicted in the waiting room. The kids’ effort was very moving. They loved their mother. But would they be able to convince her to undergo chemo? My doctor doubted it. I doubt it to, given that they were the only ones who looked worried, not her. And given that not a word passed between them.”
I’ve thought a lot about my cold cap sisters, and about that mother from Malaysia in the last couple days. Some people seem to think that the hair loss of cancer treatment is trivial, that it’s just something to be got through, that it’s not important. But the more I think of the cancer patients whom I know here in the United States and those millions whom I don’t know here and abroad, the more I think that we’re not so different.
It’s not the hair that’s important, it’s that losing your hair sets the mark of death upon you. It brands you with this big sign that says, in all caps, ‘CANCER PATIENT.” Whether or not you end up dying of your cancer, losing your hair makes you scary to other people. It creates a barrier. It makes people stare. It makes people say silly things.
A couple weekends ago, I get into a conversation with another breast cancer patient on the sidewalk after a support group meeting. She says that that day, which was warm, she makes the decision to go into a coffee bar without a scarf or cap over her bald head. “I was feeling really brave about it, until I walked in and ordered my latte,” she says. “I could just feel people’s eyes on me. I felt terrible. I just wanted to curl up into a ball.”
I’m sure the people in the coffee bar didn’t mean to make her feel that way, just as I’m sure she now will be wearing caps and scarves for the duration. These days, in the developed world, we don’t see many obviously ill walking around on the street. Heart disease and diabetes are two of the biggest killers, but you can’t tell if someone has those diseases when you pass them on the street. The most obvious sign of illness in a world that has eradicated scourges like smallpox and polio is the unnatural baldness brought on by chemotherapy. The closest analogy to chemo baldness may be the lepers of an earlier era. It makes people draw away.
I ask another clinical coordinator, who’s ethnically Chinese and has a relative who has cancer, what she thinks of my friend’s story. “I’m not sure that the desire to avoid hair loss is particular to Chinese culture,” she says. “I think it’s human to not want to appear sick. It’s human to not want to seem weak.”
The desire to keep your hair during chemo is not about vanity. It’s about not wanting to create yet another barrier between yourself and the rest of humanity. The desire to belong is so strong that many women will make medical decisions based on the desire to keep their hair. My oncologist, Dr. Rugo, says that she often has patients who resist chemo because of the hair loss. I don’t know for sure, but I would guess that some, like that woman from Malaysia, may die as a result of not doing chemo.
The DigniCap may not be able to help those women, but I sure hope the cold cap goes on to become the standard of cancer care. People shouldn’t die because they’re afraid of being bald.